Lyme disease causes many different, puzzling symptoms. How can others possibly understand? It is a daily battle for so many of us to understand and we find ourselves becoming increasingly upset and irritable when others can’t seem to understand either. As the seasons change, we face new symptoms that we must learn to adapt to living with as well as trying to live the best life possible. I wanted to put this question out into the Online Community because I think it is key to share how we deal with our health because often we feel alone, crazy and bonkers so we isolate ourselves from experiences and opportunities that come knocking on our door. We fear putting ourselves in a position where we will feel uncomfortable, unwell and ‘alien’ in so we avoid situations and events that we should be free to enjoy.
It is key to be open, it isn’t always easy and often people aren’t so lucky to have support at home which is so heart-breaking for me to hear but that is why LDUK is so special and important. For many, LDUK’s Online Community is where their main source of support lies. People can relate and share experiences without judgement and make long-lasting friends on the way, which is truly special. Expressing your worries beforehand can help you to plan your days. Rest days and balanced breaks can help to reduce the stress factor, especially as stress alone can heighten symptoms or cause even more unpleasant symptoms. Simply doing a little bit of ‘homework’ beforehand could really be very helpful. The host of the event will be aware of your plans and respect your decision to come a little later or leave earlier. Ringing ahead of time to request comfortable seating at a restaurand to discuss food options which are in line with your diet can ensure that you feel more comfortable and relaxed and less embarrassed while you’re there. Give people hosting and attending the event a heads up about how you’re feeling. They may not understand but they can’t say they weren’t told, and they will be far more accommodating if they know more about what to expect from you. They can ensure comfortable seating is in place and that food that fulfils your dietary requirements is made/bought for you. Remember the little things that take two minutes could completely change your experience.
If you are having a sudden flare up and need help, don’t just sit there and expect people to mind read, you must help them too. Be open, honest and ASK FOR HELP. It isn’t a weakness and shouldn’t be seen as a negative to ask for help. It shows great strength because you are determined to fight your symptoms and people can help you in the fight if you let them.
Here are some of the symptoms LDUK Online Community members experience which people struggle to understand:
‘I am always in debilitating pain screaming out trashing my house. I am a monster because of this. My friends have walked I have no family I scream at my partner and he winds me up chronic when I could actually kill him. I have been violent and just throw things. I don’t have a life and nor a social life. Just getting a shower tears me to shreds with pain and no pain relief or treatment. I can’t even visit my late parents grave to put flowers on. It making me suicidal. PS don’t understand. I basically just want to meet my maker and be done with all this.’
‘Gently massaging my legs and arms and neck as it helps lymph flow and I then get some mild relief from the pain.’
‘Rest after short activities. Pace myself to maintain as much equilibrium as possible.’
I felt I should be open and share my experiences too. I know what great courage it takes to be open and share your experiences with the community and I am so grateful to you for doing so. Please know your bravery and courage is so inspiring to fellow members. Thank you.
My symptoms are often difficult to explain, my joints throb and all you want to do is cut your legs off. You lie in bed at night is constant pain, everywhere you turn. Your spine throbs, you can’t pull yourself up without feeling like you have been glued to the bed and you are stuck in agony. The constant battle with my stomach, often in so much pain it hurt to sit up right, you need a sick bucket because your migraines are so bad, and any movement sends you crazy. It makes it hard to go out because you want to be the Sophie people know; chatty, interesting and social. Not a moaning Minnie.
Moving around in her chair, gritting her teeth in pain and being unable to finish her food because her stomach is in total agony and you don’t want to be sick, right there and then. I think it is important to note that many of us use social media these days and we like to post ‘positive’ images of ourselves and our lives. One picture is one second of the day. Many of us try to be open on social media to help others understand, show them evidence of our battles and so on but I also know that many of us, including myself are very stubborn. We don’t want to be negative and try to be as positive as possible to the world. This is amazing and inspiring, but it is important to be open and share a balance, so people can see you are still poorly but boy, you are fighting. It is so hard and there is no right and wrong answer. We must focus on the friends, family, online community that do support us, through ALL our crazy symptoms over the few negative people who simply can’t seem to understand or choice to be ignorant.
You don’t have to attend every event for a family member who is your number one support. They would LOVE you to be there, but out of everyone they will understand if you can’t attend and the reasons why. Remember, you do have a voice. Your pain is real, and your points/reasons are very valid. Don’t feel dismissed or ignored. If people make you feel guilty, are dismissive or get defence then we must choice not to entertain that negative energy that could have detrimental affects on our health. We may have family fall outs, friends who walk away and relationships that break down through lack of understanding. It is so upsetting, but we must stay true to ourselves and listen to our bodies, our heart, our minds and our gut. Our health is so important and if the people who judge were in our shoes would they be so misunderstanding? Unfortunately, we can’t tell but it is so important to practise self-love and listen to our bodies so we can still enjoy the events we DO attend, the experiences we have and the opportunities that come knocking.
We will know in our heart or hearts where our main support lies. Where we feel comfortable and confident going/attending. Who we can rely on and who truly understands and who doesn’t. Remember, share our precious time with the people who value us as people and our time. We deserve to be listened to and be happy. We can’t always fully understand what someone is going through but talking, sharing, being flexible and not being judgemental goes a long way. You are never alone nor are you crazy, seek comfort in knowing we are all battling our own wars and face the trouble getting others to understand is a battle we are all going through and just speaking to others within the community can be a life-line. Please connect, reach out and share your experiences because that is how we learn, improving ourselves & overall well-being.